Expert Videos

MDS experts, Dr Rafael Bejar and Dr Casey O’Connell, describe what myelodysplastic syndrome (MDS) is and how it causes anemia (low red blood cell production). They also discuss how often MDS-related anemia occurs and that it can range from mild to severe. Up to three-quarters of people with MDS have anemia at some time during the disease.

MDS-related anemia experts, Dr Rafael Bejar and Dr Casey O’Connell, explain how a blood test known as a complete blood count (CBC) can tell patients whether they have anemia. Doctors can identify anemia based on any of three values in your CBC. These are your red blood cell (RBC) count, hemoglobin (HGB) and hematocrit (HCT). The patient and doctor will decide together which one of these values to track over time.

MDS experts, Dr Rafael Bejar and Dr Casey O’Connell, provide an overview of the symptoms of MDS-related anemia. The symptoms of anemia are not necessarily specific to MDS. In general, the most common symptoms include fatigue, shortness of breath, and the need for rest following physical exertion. Other symptoms include being pale, having a more rapid heart rate, and in severe cases having low blood pressure.

MDS experts, Dr Rafael Bejar and Dr Casey O’Connell, describe what makes people with MDS more likely to develop anemia. Some types of MDS are more commonly associated with anemia. In addition, patients with higher-risk MDS are also more likely to have anemia, or more severe forms of anemia. 

MDS experts, Dr Rafael Bejar and Dr Casey O’Connell, discuss what happens to MDS-related anemia over time. They explain that it tends to worsen over time, which may indicate that the underlying MDS is advancing in stage and might need a repeat bone marrow biopsy to assess prognosis (outlook).

MDS experts, Dr Rafael Bejar and Dr Casey O’Connell, provide an overview of how prognosis (outlook) is determined in MDS. Risk scores are used to predict outlook and decide on treatment options. Your doctor will calculate your risk score based on which blood counts are low, your number of blasts, and any gene changes they see. They also describe the International Prognostic Scoring System (IPSS) and the Revised International Prognostic Scoring System (IPSS-R) tools that categorize risk, ranging from very low risk to very high risk. Lastly, the experts explain the various meanings of the term “risk” as it relates to MDS: risk of the MDS developing into acute myeloid leukemia (AML), as well as risk of overall survival (life expectancy with MDS).

MDS experts, Dr Rafael Bejar and Dr Casey O’Connell, discuss questions that patients with MDS-related anemia may want to ask their doctors. They recommend asking about the severity of their anemia, what their hematocrit or hemoglobin number is, and at what point treatment or transfusions should be started. They also recommend questions to ask after a bone marrow biopsy has been performed, such as whether the bone marrow has changed since the last biopsy, whether there are new findings in the blood cell counts, and if there are any new chromosomal abnormalities.

MDS experts, Dr Rafael Bejar and Dr Casey O’Connell, explain how MDS-related anemia is diagnosed. Doctors will first do tests to determine if the anemia is due to other treatable causes that are outside of the bone marrow – such as nutritional deficiencies, certain types of bleeding, and kidney dysfunction. If other treatable causes are ruled out, then the next step is a procedure called a bone marrow biopsy. The biopsy sample will be reviewed under a microscope for abnormal cells and genetically tested to gain insight into the bone marrow in order to make a diagnosis.

MDS experts, Dr Rafael Bejar and Dr Casey O’Connell, explain how MDS-related anemia is screened and monitored. They explain that once a patient is identified as having anemia and has gone through the process of being diagnosed with MDS, individualized therapy will begin based on the findings of each patient. For example, patients with mild anemia may receive no intervention and might only be monitored once every few months, whereas patients with severe anemia may require blood transfusions regularly and need their blood counts checked more often.

MDS experts, Dr Rafael Bejar and Dr Casey O’Connell, talk about other conditions that mimic the symptoms of MDS-related anemia. Patients with chronic lung disease and congestive heart failure can experience the same symptoms as those with MDS-related anemia, such as fatigue and shortness of breath with exertion. In these conditions, the anemia is unrelated to bone marrow dysfunction.

MDS experts, Dr Rafael Bejar and Dr Casey O’Connell, discuss the signs that patients should watch out for if they have MDS-related anemia. Patients need to let their healthcare team know right away if they experience any worsening of symptoms, such as a profound shortness of breath, lightheadedness, severe fatigue, and any overt bleeding.

MDS experts, Dr Rafael Bejar and Dr Casey O’Connell, discuss specific diagnosis questions that patients with MDS should ask their doctors. They recommend asking their doctor about their bone marrow findings, if there were any chromosomal abnormalities, what percentage of leukemia-like blast cells were in the bone marrow, and what kind of MDS subtype they have. Ultimately these all make a difference as to how the condition gets treated.

MDS experts, Dr Rafael Bejar and Dr Casey O’Connell, discuss how acute myeloid leukemia (AML) relates to MDS. About 30 percent of people with MDS develop a life-threatening blood cancer called AML. The risk of AML depends on the type of MDS you have and other factors. To help confirm a diagnosis of AML, a bone marrow biopsy is performed to capture all the changes (including genetic) that led to the condition.

MDS experts, Dr Rafael Bejar and Dr Casey O’Connell, discuss the importance of understanding the causes of unexplained anemia. It is important for prognosis to understand what is occurring in the bone marrow if you have anemia that is unexplainable by any other cause. A bone marrow biopsy can determine what subtype of MDS a patient has and what treatment they will need, even if the anemia is unexplained.

MDS experts, Dr Alan List and Dr David Sallman, describe how they diagnose myelodysplastic syndromes (MDS), including the symptoms that allude to the disease and the laboratory tests that confirm the diagnosis (blood cell counts, blood cell examination, and bone marrow tests). They also discuss cytogenetic tests that look for certain changes to chromosomes, and tests for specific gene mutations.

MDS experts, Dr Alan List and Dr David Sallman, discuss that there is currently no standardized screening test for myelodysplastic syndromes (MDS). Patients who have persistent low blood counts (cytopenias) might be referred to a hematologist to test for MDS. Patients who are at risk should be followed closely for any unusual changes or progression.

MDS experts, Dr Alan List and Dr David Sallman, describe the genetic tests that are used for myelodysplastic syndromes (MDS), and provide an overview of cytogenetics, fluorescent in situ hybridization (FISH), mutation testing, and next generation sequencing. These tests provide important MDS diagnostic and prognostic information.

MDS experts, Dr Alan List and Dr David Sallman, describe the clinical features and symptoms of myelodysplastic syndromes (MDS). Symptoms depend on which blood cell counts are low. Patients with low white cell counts (neutropenia) may have frequent infections and fever. Patients with low red cell counts (anemia) may have shortness of breath or fatigue. Patients with low platelet counts (thrombocyctopenia) may bleed or bruise easily. There is a risk that MDS can turn into leukemia if it gets worse.

MDS experts, Dr Alan List and Dr David Sallman, provide an overview of the MDS overlap syndromes that have features similar to myelodysplastic syndromes (MDS). They describe overlap syndromes such as chronic myelomonocytic leukemia, juvenile myelomonocytic leukemia, atypical chronic myeloid leukemia, and others.

MDS experts, Dr Alan List and Dr David Sallman, provide an overview of the prognostic classification systems for myelodysplastic syndromes (MDS) that are used to predict outlook and decide on treatment options. The International Prognostic Scoring System (IPSS) and the Revised International Prognostic Scoring System (IPSS-R) help determine if a patient has a lower risk or a higher risk of their MDS progressing into acute myeloid leukemia, and help doctors plan treatment.

Rafael Bejar, MD, PhD, Director of the MDS Center of Excellence at the Moores Cancer Center of the University of San Diego, explains what mutations in individual genes mean for the outlook with myelodysplastic syndromes (MDS). He also discusses the use of biomarker testing to monitor and predict MDS disease course and the importance of cytogenetic analysis to look for chromosomal abnormalities affecting MDS prognosis and treatment.

Valeria Santini, MD, Associate Professor of Hematology at the  University of Florence, Italy, describes how genetic mutations and cytogenetics give doctors insight into how MDS is likely to progress and also serve as potential targets for targeted MDS therapy. Testing for mutations in specific genes and looking for changes in the overall karyotype, or genetic profile, are both important to learn how MDS may evolve with time and treatment and can help doctors choose the most likely effective therapies.

Dr. Rafael Bejar, MDS expert from the University of San Diego Moores Cancer Center, discusses somatic mutations and germline mutations in myelodysplastic syndromes (MDS). Somatic mutations develop from changes in genes over a lifetime. Germline mutations, passed down from parents, may predispose someone to develop MDS. Dr. Bejar explains how common each of these types is in MDS and what their presence may mean for prognosis and MDS treatment.

Prof. Valeria Santini, MD, an expert on MDS from the University of Florence, describes how the specific genetic mutations you have can tell your doctor how likely your MDS is to transform into leukemia and how the disease will probably respond to treatment. Along with platelet count and white blood cell count, gene mutations and chromosome abnormalities help your doctor understand whether your MDS is high or low risk and to make treatment decisions.

Rafael Bejar, MD, PhD, of the University of California, San Diego, discusses how the presence of certain genetic mutations, including multiple mutations, reveal MDS type. This can also help predict prognosis. The absence of MDS-related mutations can also show that MDS is not present and alert doctors to diagnose a different disease.

Dr. Rafael Bejar, Director of the MDS Center of Excellence at the University of California, San Diego, explains the importance of testing for mutations in individual genes as well as karyotype testing, also called cytogenetic testing. A sample of bone marrow is the source for tissue to be tested in both these forms of genetic testing in myelodysplastic syndromes (MDS).

Prof. Valeria Santini, an expert on MDS from the University of Florence, discusses what we currently know about genetic mutations and cytogenetic changes associated with better myelodysplastic syndromes (MDS) treatment outcomes. For example, changes in chromosome 5 (some 5q deletions) can indicate a favorable response to treatment with lenalidomide. A mutation in the gene SF3B1 can also indicate a good prognosis. Prof. Santini discusses the need for transfusion and the role of multiple mutations.

Rafael Bejar, MD, PhD, of the MDS Center of Excellence at the University of California San Diego, discusses cytogenetic changes such as a deletion or partial deletion of chromosome 7 which are linked to poorer outcomes with myelodysplastic syndromes (MDS). He also discusses how a mutation in the gene TP53 or multiple chromosomal abnormalities indicate less favorable responses to MDS treatment.

Valeria Santini, MD, an expert on MDS and Associate Professor of Hematology at the University of Florence, describes how some mutations, such as a mutation on the TP53 gene, are linked to a greater likelihood of relapse after MDS treatment. She discusses the effect of having several mutations and how mutations arising during the course of myelodysplastic syndromes (MDS) can lead to treatment resistance.

Rafael Bejar, MD, PhD, Director of the MDS Center of Excellence at the University of California, San Diego, suggests asking your doctor about the availability of mutation testing and which specific tests are available. Dr. Bejar also discusses how to ask about unrelated DNA variants, hereditary mutations associated with development of myelodysplastic syndromes (MDS), and mutations acquired during or after treatment that can indicate a better or worse MDS prognosis.

MDS experts, Dr Alan List and Dr David Sallman, describe the common treatment options for myelodysplastic syndromes (MDS). The treatments discussed are: supportive care, therapies that help improve blood counts, disease-modifying treatment, high dose chemotherapy, and blood and marrow transplant (BMT). You might have some or all of these treatments, depending on your MDS type and risk category.

MDS experts, Dr Alan List and Dr David Sallman, explain that the goals of therapy for patients with lower-risk myelodysplastic syndromes (MDS) are to improve blood counts and alleviate symptoms. The treatment options for lower-risk MDS discussed are: recombinant erythropoietin, lenalidomide, immunosuppressive therapy, and hypomethylating agents. They also discuss watchful waiting if a patient with lower-risk MDS has no symptoms or doesn’t have very low blood cell counts.

MDS experts, Dr Alan List and Dr David Sallman, explain that the goals of therapy for patients with higher-risk myelodysplastic syndromes (MDS) are to improve symptoms, decrease the risk of leukemia, and improve survival. The primary treatment options for higher-risk MDS discussed are: hypomethylating agents (azacitidine and decitabine) and allogeneic stem cell transplant.

MDS experts, Dr Alan List and Dr David Sallman, provide an overview of supportive care treatments that are used to help treat or prevent symptoms or complications of myelodysplastic syndromes (MDS). They discuss iron chelation therapy (used to treat iron build up from blood transfusions) and myeloid growth factors (also called blood and marrow transplant, or BMT).

MDS experts, Dr Alan List and Dr David Sallman, describe the role of vitamin supplementation in patients with myelodysplastic syndromes (MDS). They discuss the importance of eating a healthy diet, and the importance of avoiding iron supplements or iron-containing medications in order to prevent iron overload. Work with your health care team to determine which vitamins and supplements you can use safely.

MDS experts, Dr Alan List and Dr David Sallman, provide an overview of the use of erythropoietin-stimulating agents (ESAs) for myelodysplastic syndromes (MDS). ESAs stimulate the bone marrow to help make red blood cells. They describe how ESAs are given, how often they are used, and how long the benefits typically last.

MDS experts, Dr Alan List and Dr David Sallman, provide an overview of cytotoxic chemotherapy for the treatment of myelodysplastic syndromes (MDS). This treatment uses chemotherapy to kill the abnormal cells in your bone marrow. Higher-risk MDS can potentially progress to acute myeloid leukemia (AML), so some patients with higher-risk MDS may receive the same chemotherapy treatment as AML patients.

MDS experts, Dr Alan List and Dr David Sallman, provide an overview of the use of lenalidomide for myelodysplastic syndromes (MDS). This treatment is highly effective in patients with the chromosome 5q deletion type of MDS. It may also be used in lower-risk MDS patients. They also discuss the potential side effects of lenalidomide.

MDS experts, Dr Alan List and Dr David Sallman, provide an overview of hypomethylating agents for the treatment of myelodysplastic syndromes (MDS). These medications work by turning on genes to kill the cancer cells. Examples discussed are azacitidine and decitabine. The doctors describe how these drugs are given, how they work, and potential side effects.

MDS experts, Dr Alan List and Dr David Sallman, describe the treatment cycle for azacitidine, a medication used for myelodysplastic syndromes (MDS). Treatment may be continued for as long as the patient continues to benefit. It is crucial that treatment decisions be made in consultation with your doctor, based on your personal situation.

MDS experts, Dr Alan List and Dr David Sallman, provide an overview of immunosuppressive therapy for myelodysplastic syndromes (MDS). Immunosuppressive medications work by suppressing the immune attack on the bone marrow. Examples discussed are cyclosporine and antithymocyte globulin (ATG). The doctors describe how these drugs are given, how they work, and potential side effects.

MDS experts, Dr Alan List and Dr David Sallman, discuss treatment options and sequences that might be used if the first-line treatment for myelodysplastic syndromes (MDS) does not work, or stops working. These decisions are personalized for each patient, so it is important to talk to your doctor about trying another drug, or a combination of drugs, or about possible clinical trials.

MDS experts, Dr Rafael Bejar and Dr Casey O’Connell discuss typical treatment options for MDS-related anemia. In this video, the treatment and management options discussed are: surveillance and monitoring, erythropoiesis stimulating agents (ESAs), lenalidomide, ESAs in combination with lenalidomide, and an immune-type therapy called anti-thymocyte globulin (ATG).

MDS experts, Dr Rafael Bejar and Dr Casey O’Connell discuss the goals of treatment for MDS-related anemia. The first goal is to relieve symptoms in order to help the patient feel better. The second goal is to reduce the number of blood transfusions a patient needs, since frequent transfusions can cause a buildup of extra iron in the blood, may have other potential adverse effects, and can be very time consuming.

MDS experts, Dr Rafael Bejar and Dr Casey O’Connell describe how higher-risk MDS-related anemia is treated. They discuss the use of hypomethylating agents (HMAs), such as azacitidine and decitabine, for higher risk MDS. These therapies are effective at improving low blood cell counts in about fifty percent of patients. They also explain how patients might be assessed as candidates for a stem cell transplant.

MDS experts, Dr Rafael Bejar and Dr Casey O’Connell address what is meant by “refractory anemia” and “primary anemia” and explain that these terms are becoming more and more outdated. In the past, “refractory anemia” was used to refer to an anemia that didn’t respond to any known treatment at the time. Nowadays, with MDS being better understood, refractory anemia refers to anemia that a patient has that is otherwise unexplained but may be due to MDS.

MDS experts, Dr Rafael Bejar and Dr Casey O’Connell discuss how they determine when blood transfusions are needed for MDS-related anemia. They explain that it is a very individualized decision, depending on the hemoglobin levels and symptoms of each patient. Patients with hemoglobin levels in the eight to nine range might be considered for a blood transfusion to see if they feel better. Patients whose hemoglobin levels are below the seven range will be considered for a blood transfusion, even if they don’t show any symptoms. The experts mention that some patients say they don’t feel any symptoms of tiredness or fatigue, but after a blood transfusion they feel a noticeable improvement.

MDS experts, Dr Rafael Bejar and Dr Casey O’Connell describe how often a patient might need a blood transfusion for MDS-related anemia. Generally, two units of packed red blood cells (RBCs) can last a patient for four weeks. Unfortunately, over time there are factors that can reduce the success or longevity of blood transfusions in some patients. For example, some patients can develop antibodies to the transfused RBCs, thus requiring blood transfusions every two weeks instead of four. The experts also address the opposite case, where some patients with only mild anemia can function on a single unit of blood and may not need a transfusion for a couple of months.

MDS experts, Dr Rafael Bejar and Dr Casey O’Connell discuss the safety of blood transfusions for MDS-related anemia. They explain that blood transfusions are generally very safe because the donor blood is carefully tested for any potential disease. The main concern that doctors have is the risk that a patient may accumulate too much iron in the blood (“iron overload”) after multiple blood transfusions. They also talk about other risks that are extremely rare, including allergic reactions to donor blood, or low-level mismatch that reduces the effectiveness of the red blood cells being given.

MDS experts, Dr Rafael Bejar and Dr Casey O’Connell describe what iron overload is and how it treated. They explain that frequent blood transfusions can cause extra iron to build up in the body over time, leading to a condition called iron overload. The extra iron may harm your liver and other organs. A ferritin blood test is used to monitor how much iron is accumulating in the body. If ferritin levels exceed 1000, chelation therapy will be used to remove extra iron, and this treatment can be quite effective over long periods of time. They also discuss some of the potential side effects of chelation therapy.

MDS experts, Dr Rafael Bejar and Dr Casey O’Connell discuss whether a patient’s bone marrow can return to normal and produce its own red blood cells. They describe a variety of treatments that can improve the production of red blood cells (RBCs) by the patient’s own bone marrow. They discuss erythropoiesis stimulating agents (ESAs) which help the bone marrow make more red blood cells, and azacitidine and decitabine which knock-down abnormal cells, thereby allowing normal cells in bone marrow to recover in number.

MDS experts, Dr Rafael Bejar and Dr Casey O’Connell talk about new treatments that are in development for MDS-related anemia. They discuss a new drug called luspatercept which helps improve anemia, especially among patients with sideroblastic anemia. This drug is undergoing clinical trials and awaiting FDA approval in the United States.

MDS experts, Dr Rafael Bejar and Dr Casey O’Connell talk about clinical trials for new MDS treatments. The experts describe this is an exciting time for MDS, with several ongoing trials focused on finding more effective treatments, or easier ways for patients to take treatments. They provide an overview of new drugs that will hopefully prove successful and receive FDA approval for MDS. To learn more about clinical trials and how to participate in one, please talk to your doctor.

MDS experts, Dr Rafael Bejar and Dr Casey O’Connell discuss what treatment questions patients with MDS should ask their doctors. They explain that questions will vary based on the risk stratification of each patient. For example, a low risk patient with only anemia should ask about their erythropoietin level. Patients should ask if their disease is getting worse over time, or if they need another bone marrow biopsy. With each bone marrow biopsy, patients should ask about their blast count, and about any genetic changes (i.e., cytogenetic and molecular). Patients might also want to ask about clinical trials that best suit their individual case with MDS.

MDS experts, Dr Rafael Bejar and Dr Casey O’Connell describe when a blood and marrow (stem cell transplant) is used for MDS-related anemia. Although stem cell transplantation represents the only cure for MDS, it is not a guarantee and the process is associated with a lot of risks. The decision to proceed with a transplant is a complicated one involving several considerations, including age, MDS risk category, and presence of co-existing diseases. Stem cell transplantation is often considered for people with high risk disease. On average, lower risk MDS patients will likely do better living with their disease and taking non-transplant treatments, rather than undergoing a stem cell transplant.

Valeria Santini, MD, an expert in MDS from the University of Florence, discusses how your individual genetic mutation profile provides essential information on the prognosis for your MDS as well as specific treatments. She explains what a complex karyotype is, its role in myelodysplastic syndromes (MDS) progression, and how cytogenetic testing and the type and number of genetic mutations are important in treatment planning. The mutation profile can help doctors choose therapies targeted to the MDS progenitor cells.

MDS expert Rafael Bejar, MD, PhD, explains how mutation-driven treatments for myelodysplastic syndromes (MDS) target changes on specific genes such as IDH1 or IDH2. Other examples include the use of lenalidomide, chromosome deletions in 5q as potential drivers for treatment, and treatments targeted to mutations in the gene FLT3 are present.

Prof. Valeria Santini, an expert on MDS from the University of Florence, explains that mutation-driven treatments aim to affect MDS progression by targeting chromosomal alterations or gene mutations present in MDS. She also describes how the presence of additional mutations can affect the goal of slowing progression.

Rafael Bejar, MD, PhD, Director of the MDS Center of Excellence at the Moores Cancer Center of the University of San Diego, explains how testing for genetic mutations and chromosomal abnormalities can help your doctor personalize your MDS therapy. For example, risk-based therapy based on a 5q deletion can lead to therapy with lenalidomide and mutations on the IDH genes can lead to treatment with specific chemotherapy drugs.

MDS expert Valeria Santini, MD, of the University of Florence, advises patients to ask their doctor which genetic tests are available for suspected myelodysplastic syndromes (MDS). Karyotype testing for chromosomal abnormalities in MDS is essential, as is genetic testing that can find a wide array of mutations, including less common ones. Patients should ask about testing to look for new mutations during and after treatment so treatment can be adjusted if necessary.

Rafael Bejar, MD, PhD, head of the MDS Center of Excellence at the University of California, San Diego, explains how the small number of mutation-driven MDS treatments remains a challenge. These treatments include targeted therapy for mutations in the genes IDH1 and IDH2, as well as luspatercept for people with a mutation in SF3B1. Learning about resistance mutations is also important for improving treatment response and developing additional mutation-driven MDS therapies.

Valeria Santini, MD, an expert on MDS from the University of Florence, describes karyotype analysis (cytogenetic testing) done when MDS is suspected, as well as how often it should be repeated. Testing for gene mutations and cytogenetic alterations is important throughout the course of treatment as a key to prognosis and targeted therapy.

MDS expert Rafael Bejar, MD, PhD, shares how the type of genetic mutation present in MDS can make an allogeneic stem cell transplant, or bone marrow transplant, more desirable – for example, in high-risk myelodysplastic syndromes (MDS). Knowing which genetic mutations are present can also help doctors and patients decide if alternatives such as experimental therapies or myelodysplastic syndromes (MDS) are better options if the mutation makes relapse more likely.

MDS experts, Dr Alan List and Dr David Sallman, describe what blood and marrow transplantation (BMT) is, and when it is used for myelodysplastic syndromes (MDS). Doctors also call BMT a stem cell transplant or hematopoietic stem cell transplant. BMT is a treatment that replaces your diseased stem cells with healthy ones. BMT is the only treatment that may cure MDS. The doctors explain how it works and who is eligible for BMT. They also describe allogeneic transplant (using cells from another person) and autologous transplant (using your own cells).

MDS experts, Dr Alan List and Dr David Sallman, provide an overview of who can be a donor for blood and marrow transplantation (BMT) for myelodysplastic syndromes (MDS). A donor can be a sibling, a child, or someone from the bone marrow registry who is not related to you. A matching donor is found using a test called HLA typing. HLA-matched bone marrow is less likely to cause a potential side effect called graft versus host disease (GVHD).

MDS experts, Dr Alan List and Dr David Sallman, describe the process that a patient will go through when receiving a blood and marrow transplant (BMT) for myelodysplastic syndromes (MDS).The procedure takes place in hospital and begins with chemotherapy. After a few days, the new stem cells are given to the patient via central line. Once in the body, the new cells will circulate and in time begin to grow and make new, healthy blood cells. The doctors also discuss potential side effects, as well as the monitoring and follow-up care that is required.

MDS experts, Dr Alan List and Dr David Sallman, provide an overview of graft-versus-host disease (GVHD), which might happen after an allogeneic transplant (a transplant that uses stem cells from a donor). In GVHD, the donor cells that make up your new immune system see your body’s cells as foreign and start to attack them. They also discuss acute GVHD and chronic GVHD, as well as medications to prevent or treat the condition.

MDS experts, Dr Alan List and Dr David Sallman, discuss the effectiveness of blood and marrow transplantation (BMT) for myelodysplastic syndromes (MDS). BMT may cure MDS in some patients, while for others remission may be the best result. Talk to your doctor about whether BMT is an option for you.

MDS experts, Dr Alan List and Dr David Sallman, discuss the safety of blood and marrow transplantation (BMT) for myelodysplastic syndromes (MDS). Outcomes have improved in recent years, and more patients can now be considered for BMT. The success of the transplant and the severity of side effects vary from person to person, and can be difficult to predict. Talk to your doctor about whether BMT is an option for you.

Dr. Amy E. DeZern, a professor of oncology at The Johns Hopkins University School of Medicine, explains what a clinical trial for MDS is and why these studies are important. She explains that a clinical trial is an experimental protocol and can involve the treatment of a patient who has MDS with a drug that has not yet been approved by a regulatory authority. Unfortunately, because there are not as many drugs available for treating MDS, Dr. DeZern describes that an important goal of MDS clinical trials is to develop pathways for new drugs, or other interventions, to offer additional treatment approaches and opportunities for hope for patients with MDS.

Dr. Amy DeZern, a hematologist and oncologist, talks about how MDS clinical trials are carried out and what to expect if you participate in one. Dr. DeZern reviews the various types of clinical trials that exist but primarily focuses on explaining the role of interventional trials in the study of MDS. She describes where these trials are typically conducted, as well as the different "Phases" of trials you might participate in and how these differ from each other. Dr. DeZern further remarks that although there is no guarantee, these trials will hopefully lead to a new treatment receiving approval to be added as standard of care for patients with MDS.

Dr. Amy DeZern, an oncologist and MDS clinical trialist, discusses what the benefits are of being in an MDS clinical trial as well as the risks. She explains that there are many benefits to participating in a clinical trial, including: the opportunity for hope; added observation and monitoring; the satisfaction of contributing to the field of understanding; and the potential that the treatment being studied might be effective for you. Dr. DeZern also discusses the possible risks from participating in a clinical trial, which include: concern about receiving treatments that have not been previously tested in humans; receiving treatments that have not demonstrated the ability to effectively treat MDS in humans; and increased healthcare appointments that are likely further away from your home.

Hematologist and oncologist Dr. Amy DeZern discusses how your safety and privacy will be protected if you join an MDS clinical trial. She says that your safety, privacy, and attention to your care will remain the utmost priority to all clinical trialists and physicians, should you consider or choose to participate in an MDS clinical trial. To help you feel as safe as possible, you will have access to the treatment team and clinical trial team when you are receiving a new intervention. Through the informed consent process and HIPAA, your privacy – including your medical and social safety – is protected by law and is taken very seriously by clinical investigators throughout the world.

Dr. Amy DeZern, a professor of oncology and hematologist, discusses if you feel uncomfortable during an MDS clinical trial, whether you are obligated to continue participating. She emphasizes that you would never be obligated to participate in a clinical trial – of any type – as it remains your decision throughout the entire course of the trial. Open communication and trust should be fostered between you and your clinical trial care team, should you have any questions or concerns. At any point, you can choose to leave a clinical trial if something becomes uncomfortable or if you have concerns that the trial is no longer meeting your goals.

Dr. Amy E. DeZern, Vice Chair for Hematologic Malignancies at The Johns Hopkins University School of Medicine in Baltimore, Maryland, discusses how you can find an MDS clinical trial that is appropriate for you. To start, she suggests accessing the many resources offered by the MDS Foundation (www.mds-foundation.org/learn/find-a-trial), along with the many patient advocacy groups that exist. Dr. DeZern also shares the web resource ClinicalTrials.gov to search for open and ongoing MDS clinical trials. In addition, she also recommends having an early conversation with your primary hematologist or oncologist and asking to be referred to a center that conducts clinical trials, if that option is available.

Hematologist and oncologist, Dr. Amy DeZern discusses why diversity is important in MDS clinical trials and what benefits diverse clinical trials provide. She explains that clinical trials should aim to reflect the diversity of the many different individuals that make up a population to better determine whether a clinical trial intervention is helpful to a broad spectrum of people or a specific subset. Since historically, clinical trial participants were less diverse, Dr. DeZern emphasizes the importance that participant enrollment reflect a broader range of considerations such as: disease type, race, ethnicity, healthcare, and economic diversity. This would help ensure that a new treatment is more broadly applicable and available to everyone suffering from MDS.

Dr. Amy DeZern, an oncologist, hematologist, and MDS clinical trialist, talks about why some patients are not participating in MDS clinical trials and what some of the barriers to enrollment could be. She acknowledges that several reasons exist, including: lack of knowledge about access and the ability to get different treatments among both patients and some providers; elderly age as a major contributing challenge to being able to commute to sites where the trials are being held; and the fear of not being kept safe or being experimented on. Despite these barriers and limitations, Dr. DeZern assures that clinical trial investigators are very aware and sensitive to these concerns and that solutions are being sought. These can range from offering additional trial centers that are closer to a patient's home, demystifying patient fears and concerns via consultations, and educating community practitioners more about clinical trial accessibility and potential for improved outcomes for MDS patients.

Dr. Amy DeZern, a professor of oncology and hematologist, discusses if you feel uncomfortable during an MDS clinical trial, whether you are obligated to continue participating. She emphasizes that you would never be obligated to participate in a clinical trial – of any type – as it remains your decision throughout the entire course of the trial. Open communication and trust should be fostered between you and your clinical trial care team, should you have any questions or concerns. At any point, you can choose to leave a clinical trial if something becomes uncomfortable or if you have concerns that the trial is no longer meeting your goals.

Dr. Amy E. DeZern, Vice Chair for Hematologic Malignancies at The Johns Hopkins University School of Medicine in Baltimore, Maryland, discusses how you can find an MDS clinical trial that is appropriate for you. To start, she suggests accessing the many resources offered by the MDS Foundation (www.mds-foundation.org/learn/find-a-trial), along with the many patient advocacy groups that exist. Dr. DeZern also shares the web resource ClinicalTrials.gov to search for open and ongoing MDS clinical trials. In addition, she also recommends having an early conversation with your primary hematologist or oncologist and asking to be referred to a center that conducts clinical trials, if that option is available.